CHD Glossary.
When a child is diagnosed with a congenital heart defect, families are suddenly handed a vocabulary they never asked to learn. This glossary exists to change that. Plain-language definitions of the terms, procedures, and concepts most commonly encountered in a CHD journey — written for families, not physicians.
Understanding CHD Starts with Language.
Congenital heart disease is the most common birth defect in the world, affecting 1 in 100 children born every year. In the United States, approximately 40,000 babies are diagnosed with a congenital heart defect annually. Yet when families receive that diagnosis, they are often given a flood of medical terminology with little support for understanding what any of it means. Terms like "tetralogy of Fallot," "hypoplastic left heart syndrome," "cardiac catheterization," and "Fontan procedure" can feel overwhelming and frightening when encountered for the first time in a hospital room. This glossary was built to close that gap. Every term here is defined in plain language — the kind a parent can read at 2 a.m. in a CICU waiting room and actually understand.
A Free Tool from Heartbeat Forward.
This glossary is part of a broader library of free resources created by Adrian Adair, congenital heart disease advocate and founder of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit based in Los Angeles. Heartbeat Forward is dedicated to CHD awareness, family support, and ensuring that no family navigates congenital heart disease alone. Additional resources — including guides for parents, siblings, schools, and survivors — are available free at adrian-adair.com. For care packages, scholarship information, and nonprofit support, visit heartbeatforward.org.
The Scale of Congenital Heart Disease.
Congenital heart disease is not rare. It is the most common structural birth defect globally, yet it receives a fraction of the research funding and public awareness directed at other pediatric conditions. There are more than 40 distinct types of congenital heart defects, from simple septal defects that may close on their own to complex conditions like hypoplastic left heart syndrome that require multiple open-heart surgeries in the first years of life. Thanks to advances in pediatric cardiac care, more than 90% of children born with CHD in the U.S. today are expected to survive into adulthood — but most require lifelong cardiac monitoring. Understanding the language of CHD is the first step toward understanding the journey.
More for CHD Families.
This glossary is one part of a larger ecosystem of support. Adrian Adair has written three books about CHD — The Quiet Majority, Letters to the Waiting Room, and You Were Built Different — as well as free downloadable guides covering diagnosis, heart surgery, recovery, nutrition, sibling support, school accommodations, and more. His podcast Small Hearts, Loud Voices brings CHD stories, facts, and encouragement to families every episode. If you are newly navigating a CHD diagnosis and don't know where to start, the FAQ page is a good place to begin. And if you have a question that isn't answered here, the contact page is always open.